Do people living with HIV have a right to protect their health data?

“Consequently, as new cases brought new issues and problems before the Court, the content of the right to privacy has found elaboration in these diverse contexts. These would include telephone tapping (PUCL), prior restraints on publication of material on a death row convict (Rajagopal), inspection and search of confidential documents involving the banker – customer relationship (Canara Bank), disclosure of HIV status (Mr X v Hospital Z), food preferences and animal slaughter (HinsaVirodhakSangh), medical termination of pregnancy (SuchitaSrivastava), scientific tests in criminal investigation (Selvi), disclosure of bank accounts held overseas (Ram Jethmalani) and the right of transgenders (NALSA). Early cases dealt with police regulations authorising intrusions on liberty, such as surveillance. As Indian society has evolved, the assertion of the right to privacy has been considered by this Court in varying contexts replicating the choices and autonomy of the individual citizen.” – Supreme Court, Justice K.S. Puttuswamy and ANR. Vs. Union of India (2017)

The recent historic Supreme Court judgement that declared right to privacy as a fundamental right (guaranteed under Article 21 of the Indian Constitution) with reasonable restrictions,has looked at the intersection of privacy and medical jurisprudence in cases previously dealt with by the Supreme Court of India. Interestingly, this intersection has also included HIV and the right to privacy.

Existing challenges faced by HIV High-risk groups:

This judgement becomes especially more relevant for the members of high-risk groups living with HIV. National AIDS Control Organisation (NACO) classifies Female Sex Workers (FSW), Men who have sex with men (MSM), Transgenders (TG), Injecting Drug Users (IDU) and Truckers & Migrants as the high-risk groups most susceptible to HIV. It is worth noting that members from these groups are required to fill-out group specific application forms prescribed by NACO while testing for HIV. Though the National AIDS Control Programme is in Phase IV, these high-risks groups have been facing various degrees of challenges.

Apart from social prejudice, transgender community faces issues with valid identification document due to their gender identity. Often the gender and name on their official identification documents is different from the name and gender that they identity. Though the NALSA judgement 2014 gave them the right to their gender identity, procuring valid identification documents continues to be a challenge for the community. It is worth noting that Section 377 of the Indian Penal Code criminalizes the act of homosexual intercourse.This could apply to both MSM and transgenders. Due to the social stigma associated with their identity, it becomes significantly difficult for members of the transgender group, MSM and sex workers to reveal their identity in HIV testing centres, notes PawanDhall, Gender and Sexuality activist, Varta Trust and ex-Country Director, SAATHII. There is also the challenge of negligence from the hospital or testing centre staff with respect to revealing their identity or HIV status.

“No matter how much we say or NACO says why is that a lot of people ever want to go for a test on their own? It is because of their confidentiality being compromised. There have been so many examples of people saying that the problem begins once the counselor sends the person to the lab technician for the test. You will give your blood and go back home.If your test is positive on the day you come back you are almost at the mercy of the lab technician or the counselor. If their mind is not in the right place, they will talk about it out loud and people all around will come to know,” notes Dhall.

Aadhaar integration for HIV programme and the issues:

The government intends to establish integrated health information architecture to strengthen health surveillance, establish registries for diseases of public health importance by 2020.National Health Policy 2017 suggests exploring the use of Aadhaar for identification with heavy emphasis of privatization of healthcare in the country. Hence NACO’s website mentions initiating a project to link all PLHIV (People Living with HIV) to the Aadhaar card. It is not clear though if it has been mandatory.

However, it appears that some states (Madhya Pradesh andRajasthan)have mandated this linkage even with the Supreme Court saying that it is not mandatory to link Aadhaar. Though Aadhaar integration was expected to solve the issue of duplication of enrolment at ART centres for HIV treatment, it on the other hand, seems to have aggravated the situation. Patients have been avoiding registration with Anti-Retiroviral Therapy (ART) centres for treatment in Madhya Pradesh since this integration, notes Hindustan Times. Speaking to the India Express, about a 37 year-old sex worker diagnosed with HIV in Mumbai, PoojaWalawalkar, project manager for NGO Aditi says, “She fears that her neighbours will come to know if after linking the Aadhaar card some health worker turns up at their door.” The report also states that several sex workers get treated under a different name to conceal their identity. It is worth noting that presently (NACO Annual Report 2016-17), FSW (6,03,236), MSM (2,06,007), IDU (1,21,840), TG (29,325), Migrant (29,25,882) and Trucker (9,29,675) are under the Targeted Intervention Programme of NACO that works on preventive interventions for high-risk groups. Aadhaar linkage also aims at reducing the ‘Lost to Follow-Up’ cases who have dropped out of the ART centres and discontinued their HIV treatment.

“Aadhaar will definitely help you have unique listing but how that in itself will help in making sure that the person comes back again and again to get the medicines, that I’m not quite convinced,” notes Dhall.

Apart from privacy, there is the risk of exclusion due to authentication failures and deactivation of Aadhaar without recourse for the Aadhaar holder. So there seems to be no guarantee with respect to reaching out all that the programme is intended for.

It is worth noting that when a crime related to personal data occurs, UIDAI is not under any legal obligation to inform the Aadhaar user. Under Section 47 (1) of the Aadhaar Act, only UIDAI has the exclusive power to make complaints in case of violation of privacy or data breach.

What will change with Right to Privacy judgement?

Even prior to mandating Aadhaar, people living with HIV have been facing social stigma when their HIV status has been revealed. What is the protection assured to them against harassment, once their Aadhaar biometrics and phone numbers are also entered into the system to access healthcare? While there may be legal protection by way of the HIV Act, Medical Code of Conduct, Supreme Court’s judgement declaring right to privacy as a fundamental right, will that 37 year-old sex worker understand her legal and fundamental right to privacy as a citizen? Will the knowledge of the right to privacy be sufficient to handle the social stigma?

Addressing this concern, in its right to privacy judgement, the Supreme Court states that “elements of privacy also arise in varying contexts from the other facets of freedom and dignity recognised and guaranteed by the fundamental rights contained in Part III;”

“In State Vs Kharak Singh, the Supreme Court says right to life does not mean a mere animal existence, which means a life of dignity. In the event of intentional or unintentional disclosure of my HIV status or any other status, which might strip me of my dignity in the eyes of the society , no amount of punishment to the persecutor or compensation to me can bring that dignity back to my life for the rest of my life. This is where the state, even before saying that it should punish and compensate must put into place the process such that the citizens of India are not stripped of their dignity,” says Kaushik Gupta, lawyer and social activist explaining the impact of any breach of privacy at a personal level of any individual.

However, the consequence of the right to privacy judgement with respect to the impending Aadhaar case in the Supreme Court of India is yet to be seen. The right to privacy judgement has however taken cognizance of informational privacy especially with respect to sensitive data. It says:

“Informational privacy is a facet of the right to privacy. The dangers to privacy in an age of information can originate not only from the state but from non-state actors as well. We recommend to the Union Government the need to examine and put into place a robust regime for data protection. The creation of such a regime requires a careful and sensitive balance between individual interests and legitimate concerns of the state. The legitimate aims of the state would include for instance protecting national security, preventing and investigating crime, encouraging innovation and the spread of knowledge, and preventing the dissipation of social welfare benefits. These are matters of policy to be considered by the Union government while designing a carefully structured regime for the protection of the data. Since the Union government has informed the Court that it has constituted a Committee chaired by Hon’ble Shri Justice B N Srikrishna, former Judge of this Court, for that purpose, the matter shall be dealt with appropriately by the Union government having due regard to what has been set out in this judgment.”

However, the onus now rests on the Committee chaired by Shri Justice B N Srikrishna and the Government of India to protect the interests of the citizens. The impending petition challenging the Government’s move to make Aadhaar mandatory for social welfare schemes in the Supreme Court will be a defining judgement for the rights of Indian citizens.